5HTP update – The Dream of the Crazy Penguin

September 25, 2009 at 10:19 am | Posted in rheumatoid arthritis (RA) | 1 Comment
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I have been taking 5HTP for my fibromyalgia now for several weeks, and my overall verdict is that IT WORKS! My sleep pattern has improved enormously … although Spain did cause a temporary blip! I now get to sleep far more quickly and easily than ever before, and generally if (when) I wake up in the night, I find it easier to get back to sleep than I used to.

I must also be getting better quality sleep because my dreams are SO much less interesting on the whole! I think this is because I’m having less dreams and more deep sleep.

Just to give you an idea of the difference in dreams, here’s a pre-5HTP typical dream:

Pollyanna Penguin is driving along a 5-lane motorway and suddenly realises she’s lost. Cars are whizzing past on both sides. PP panics, starts to swerve … but it’s OK, suddenly the car is flying. Weee … PP still doesn’t know where she’s going but sails happily over the rest of the cars to a beautiful tropical island. Suddenly hubby is in the car too. They land and … do what penguins and their hubbies like best for a while, before realising the cats are missing. Then a huge panicked chase and attempt at cat herding ensues with much yelling and running around. (At this point … if not before, I’m usually tossing and turning in the bed, throwing the covers around and shouting my head off.)

Post 5HTP dream:

Pollyanna Penguin is driving along a 5-lane motorway and suddenly realises she’s lost. Cars are whizzing past on both sides. PP pulls over and wakes hubby up and gets him to look at a map. They work out where they’re going, hubby takes over the driving and PP admires the view. The end.

It’s a bit boring but so much more restful – my fatigue problems are definitely reduced these days. I can cope with a few boring dreams if I feel this much better for it!

I’m not having a good morning

August 28, 2009 at 6:29 am | Posted in rheumatoid arthritis (RA) | Leave a comment
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Woke up at 5.30 and my iPod (normally life, or at least sanity … or at least remains of sanity saving at this time of day) was out of charge … because I fell asleep with it on last night!

So I crept out of bed so as not to wake hubby up, thinking I might sneak an early coffee and breakfast as he’s on a fasting blood test (more of which later if I get round to it) and can’t have anything until the nurse has been round at half-past-seven.* Of course I instantly woke him up and now he’s up too … so much for that plan.

So I thought I’d charge my iPod and I put my PC on … only to find a small spider running in and out of the keyboard. Fortunately I’m not arachnophobic … unfortunately I’m a big softy and don’t want to squash the damn thing … and arachnaphobic or not, frankly I don’t fancy the idea of it running up my fingers and down my arms … eeeeeeeeeeeooooooo.

Oh yes, and the reason I can’t sleep is that work is really stressful right now …

So this thing about getting enough sleep and avoiding stress … I think I’m having some problems with it right now. Now where did I put those coping strategies … probably somewhere under that enormous pile of work …

* Before you faint at the idea of a nurse coming round at 7.30 (especially Frankie) she’s not NHS – she’s part of a research study … obviously a well funded one! More on that later though.

5Htp for Fibromyalgia … and a dose of morning stiffness thrown in

August 18, 2009 at 1:19 pm | Posted in rheumatoid arthritis (RA) | 3 Comments
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Well I got my 5Htp (5-Hydroxytryptophan) in the post yesterday and gave it a try for the first time last night. 5HTP is a plant extract which is converted to serotonin in the liver, and serotonin, amongst other things, helps to sort out the balance of sleep – the lack of which is suspected to lead to fibromyalgia. It’s all a bit uncertain and unproven but my sister-in-law-to-be, who has had fibromyalgia for some time, reckons it does help her, so I thought I’d give it a try.

Well I certainly slept like a log yesterday and feel better for it today. Whether it was the 5Htp or the fact that I had an exhausting, though thoroughly enjoyable, weekend, I’m not sure! I shall keep using it through the week and see how I go.

One thing I did notice was that for the first time in a long time I woke up with quite a bit of morning stiffness. Luckily that was at 5.40am, so by the time I needed to get up at 7.00 it had worn off (and yes, I did have some sleep between 5.40 and 7.00!)

I do wonder if a more solid, deep and peaceful night’s sleep does lead to more morning stiffness, because my usual sleep is SO disturbed that my body isn’t resting in one place for long, so the joints don’t have the opportunity to get stiff. My consultant did one of those looks over his glasses when I suggested this a while back, but it seems logical to me!

Dreaming-v-Sleeping

July 5, 2009 at 7:43 am | Posted in rheumatoid arthritis (RA) | Leave a comment
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I love the song Dreaming by Loudon Wainright III, although he must have written in it one of his more depressed moments and it usually makes me cry, but I realise that I definitely can’t agree with the sentiments (which is no bad thing!), and in particular the last verse, so here’s his last verse and my fibromyalgia and RA-induced response!

Given that last night I dreamed I was a vampire with amnesia who had no idea why a friend of mine had vanished, because I’d forgotten I’d had her for breakfast, you can see why I’d rather have a good bit of deep sleep!!

Part of Dreaming by Loudon Wainright III

I’d rather be dreaming than sleeping
Just sleeping you’re just as well dead
In dreams I can fly
In dreams I don’t die
That’s why I lie here in this bed
Just sleeping you’re just as well dead

Sleeping by Pollyanna Penguin I

I’d rather be sleeping than dreaming
I think about dreaming with dread
In sleep I can heal
In sleep I can’t feel
That’s why I lie here in this bed
No sleep and you’re just as well dead

Fibromyalgia AND RA … but there’s light at the end of the tunnel

June 28, 2009 at 10:00 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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Well, I had my consultant appointment on Wednesday – saw one of the registrars who was really nice, listened, sympathetic, examined properly, no sarcastic comments or comments about how lucky I was to have RA mildly. (I figure no one’s lucky to have RA – full stop!)

She did drop a bit of a bomb-shell though, or so I felt at the time – that my symptoms indicated fibromyalgia as well as RA. Fibromyalgia symptoms are aches and pains in the muscles around some joints, serious fatigue and a feeling of general unwellness … sounds quite simliar to RA in many ways, only muscle based, and one of its old names was in fact muscular rheumatism.

Having got over the initial shock and feeling of oh hell, something ELSE to contend with, I can see some reasons to be cheerful though!

1. My sister-in-law has had fibromyalgia for quite some time now – grim for her, but it’s handy for me to have someone I can talk to who really understands what it’s like.
2. It’s not like having RA twice over – which was my initial feeling. Fibromyalgia (which makes you feel generally crap and all over achey, and actually affects muscles) is not progressive and not (if you can crack it) permanent.
3. The current most popular theory about fibromyalgia is that it’s fundamentally caused by a lack of deep sleep. People with fibromyalgia may be insomniacs, but just as often they’re people who seem to get plenty of sleep, but it’s REM sleep (dreaming sleep) rather than deep sleep, and that’s not good enough. And the good news is there ARE things I can do that can improve my sleep.
4. There IS a drug that’s often successful in curing fibromyalgia if given in small doses (amitriptyline) but it has some unpleasent side effects including weight gain, the last thing I need! But before I try that there are also things I can do to try to balance my own sleep pattern. These are getting aerobic exercise (kinda tricky with RA but I’m working on it), having a regular routine and going to bed at similar times each night, reducing tea and coffee (a real challenge for me, but as most of it is instant and decaf I don’t think it’s much of an issue really) and possibly trying a supplement derived from griffonia (griffonia simplicifolia) seeds, called 5 htp, which increases seratonin in the brain and may help to improve sleep.

5. Because there are things I can actually do to help myself, however challenging they may be, I actually feel empowered – I feel I have a chance to kick this latest thing right back, whereas with the RA I feel, I suppose, pretty disempowered; I just have to lie back and hope the meds work.

So … right now I’m feeling surprisingly positive about the whole fibromyalgia side of it. Let’s hope I can keep up the exercise, regular bed times etc. and that that actually does do the trick. As to the RA, I’m on an increased dose of methotrexate although the consultant was wondering if I was just one of those people it wasn’t going to be great for – but having had a very good response to it early on, she and I both think it’s worth a shot to give it another few months on a higher dose. After all, in the UK on the NHS with mild RA, there’s not much alternative!

Yay! I’m having Monday off!

March 6, 2009 at 1:57 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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I’ve had a really, really lousy week. Work’s been completely bonkers, I haven’t slept well and I’ve been stressed out of my mind. Funnily enough the RA side of things has been pretty good (not fantastic, but better than for a while!) I’ve noticed in the past that when I get tired and stressed the RA seems to get worse, but now I wonder if I had my cause and effect muddled – the RA was worse, which made me feel tired and stressed.

This time I know it’s work that’s done it, not illness.

I’m having Monday off, that’s THREE WHOLE DAYS OFF IN A ROW! Last time I did that was Christmas, I shall return to work on Tuesday a new Penguin – full of beans and the joys of spring. (OK, so we had hard frost this morning and they’re threatening snow, but hey, the bulbs are string to poke up above the ground, the sun is shining, the crocuses are flowering and tiny cat is starting to go out again – it must be spring.)

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