It's two in the morning.....

Sounds like a good title for a song! However, it does just happen to be the time. I am sat here waiting for my old self to come back. I am feeling quite peculiar, my knees are on fire, my shoulders ache and I feel nauseous.

Although my body is crying to get some rest, my mind is whirring. I am quite delirous and loopy at the moment. Now I think the nausea might just be down to the fact that I have over-indulged on that rather nice box of classic Thornton choccies. Not sure..... I don't know, you can't even blooming well be naughty now without suffering!

I am joined on the sofa by the puddy tat, who I think is waiting for me to finish so that we can go out mouse hunting together. I might just do that if it wasn't for the fact that it is belting down with rain - the real reason the cat is in!

Mr Silageman is upstairs snoring his little head off, my daughter is off for the night for a girlie night with her friends and son and heir has gone to his girlfriends to try and redeem himself. He was supposed to take her to the pictures tonight but he was too late coming in off the farm!

So, considering I could hardly keep my eyes open earlier, and having given up and gone to bed at 9, I am just left wondering why on earth I can't sleep. I was reading the "Arthritis Helpbook" by Kate Lorig and James F Fries (not chips but fries - it's an Amercian- ha!). I was reading about pain, pain management and drugs, which runs alongside my RA education sessions. According to the book, and this is backed up by my OT's, there is no point in taking pain killers when you have been suffering with chronic pain. The chronic pain from arthritis does not respond to painkillers because it's not real, it's in the brain. Interesting concept. So through gentle exercise, and relaxation, and mind over matter, we should be able to manage the pain from chronic conditions such as RA and Fibromyalgia.

Hmmmm, right then. What happens is that long after the inflammation, say from a flare or injury, has gone, because of the extended period of pain, the brain pain patterns which have been established during that time, continues to send messages via the over sensitised central nervous system to the affected areas of the body (i.e. my blooming knuckles, shoulders and knees) saying that the limbs are in need of attention? The brain and nervous sytem are trying to say that part of the body is hurting so needs attention when in actual fact it no longer requires it? You following this? Right. So. I am just going to have a little chat to my knees and shoulders (on the assumption that I am experiencing chronic pain and not acute pain). I shall tell them that they are not really hurting, they only think they are because they have done in the past. There! Simples!

Right then, I am off back to bed now because I think the co-dydramols are just beginning to kick in.... night

You all take care out there - it's a blooming mine field.

Love Julie xx

[cathie]

I saw your blog about 3.30 but thought if I responded I'd wake even more. I hope as I write you're still dozing and that someone will bring you a cup of tea shortly. I woke because my face was puffed up and stinging from my light allergy. Not pain so much as irritation.

That ra book is it written by californians? Or relatives of that French film director who made a film called the Trojan war will not have happened? (snappier in French). I think I must be a bit delirious too.

But I hope you feel better after a good nights sleep

Cathie xx

[Judi]

Hi Julie, hope you have now managed some sleep. Think we have all been there ourselves so we can all sympathise with you, I had the same thing myself last Tuesday night.

I plug a small radio in my ear at bedtime now and listen to a station which is conversation only (i.e. no music) this helps me - I think I get bored listening and then eventually fall off to sleep.

The chocs. may be what wasn't helping you get off to sleep, a bit like coffee I believe it contains caffine (cant think how to spell that)..

Definitely a strange concept about pain being in the brain - if I met them I would put two questions to them: (1) do they suffer from RA or any other continual pain - (2) are the swellings which are clearly visible in my feet and knees a figment of my imagination?

xxxx

[Hidden]

ooh julie.. your pain thing.. my consultanr is trying to say that applies to me.. in our last chat... and on Drs letter I ask for quick scan at Gps.. chronic pain syndrome is mentioned.. i had a nice sleeping tablet my little zopiclone friend as my brain was whirring and some aches and pains.. followed this with an historic sleep til 8.45. (tablet was about 1am! woke by small putty cat on bed the little one came to say were the hell are you(breakfact?)! as I am usually up by 6.45!.

Have an afternoon nap thats what I normally do!!. my prob was I had ventured out with friends and overdone the diet coke!!

[Hidden]

At risk of sounding nuts I'm trying to study and even harness the pain I'm experiencing as part of my work as a research-led artist. I feel if I can make myself be more detached (and braver) about it then it will help me deal with it constructively so I'm trying not to take pain killers, on the basis that pain is there for a reason, and instead to just record it in a log - with accompanying drawings to describe the emotions that I'm experiencing. Haven't got very far with this yet though because I'm so easily distracted just now!

So at 4am I ended up waking (it might have been a teen son coming in "quietly") or the deep heat and pain in my feet - but I was wide awake whatever). So I started work on this pain journal,l but ended up emailing a GP friend instead because it's easier to concentrate if I am describing it all to someone I know well. Especially as she's a GP (not mine!) and a pretty enlightened one I think it might help her engage even better with patients experiencing chronic pain.

Not sure about the Californian take - they have so many new age theories on everything there I believe and I'm afraid I'm very sceptical. I did read recently that pain can be addictive because of the numbing endorphins it releases that give people a high - but I imagine that's acute pain rather than chronic pain - and self-inflicted too as when people get more and more tattoes done . Telling anyone with RA that pain can be addictive is a bit like telling an inuit who is busy struggling to survive - that in our Western World people attack each other and do terrible things to others. Apparently when a group of eskimos were told this they all fell about laughing at the absurdity of it as an idea!?

Some of the pain I'm experiencing presently does seem to be more acute than chronic - it comes in deep, sharp flashes - very much like toothache where you get this unbelievable surge of pain that comes flashing through your mouth and takes your breath away and you think to yourself "hey did that really happen?". It would be interesting to hear your description of the physical pain you are experiencing.

And as one who has always had chronic eczema and sun reactions and allergic reactions up until my recent menopause I relate strongly to your suffering too Cathie. Poor you.

[Hidden in reply to Hidden]

Hi Tilda - you have some brilliant things to say. In our society yes you are probably nuts (tongue in cheek) !! I think it is absolutely fascinating about the eskimos and just goes to show how culture and society shapes who we are - who is free?

I am going to re-blog because this reply is going to go on a bit.... bear with me

[sylvi]

Oh Julie you poor love, i know exactly where your coming from. As for that american, they clearly don't know what their talking about. Sorry but thats how i feel about some of these people. As they don't suffer from what you are going through how can they sit there and tell you its in your mind. My consultant once told me he's an expert and he doesn't know enough about ra. At least he was honest. I can't help during the night, but know my thoughts are are wih you as i suffer like that sometimes. Take care, sylvia.xx

[Tricia-P]

Hi Julie

So sorry that you having probs, your one day up two down at the moment. My GP and Rheumy have the opinion that you should take a steady course of pain reliefso you have constant pain relief! rather than chase it all the time hense i have the patches. The other thing is tell your lot down there that when i turn wrong or bend the PAIN that comes from my spine has actually left me just about passed out, and that is certainly not in my mind, I've got the pictures to prove it. The chocs may have something to do with the icky feeling too much caffeine. Hope you feel better soon much love. Sandy sends his as well and to you Ali

xTx

[Hidden]

oh Julie, I have so much to say on this subject but achy hands will prevent me!

I suffered from Fybromyalgia 10 years ago for 5 years, was treated using 'mickle therapy' and until I became ill with RA, I had 5 years pain free...

If anyones interested the site is mickletherapy.com

Whether I actually had fybromyalgia, I really can't say but this technique worked for me. It will not cure RA of course but I feel this has helped me deal with pain of RA for now.

Long story short, when we are in pain our brain sends signal to stop/help that pain, although we can't stop it the stress and worry of having RA causes me emotional pain (you know that horrible gut feeling of guilt ect) so on top of everything else, our brain is receiving signals to deal with this 'emotional' pain, which it can't, so it keeps trying to fix what it can't resulting into your immune system going into overdrive.......flare attack.

During my first flare I noticed than some of the pain creeping in was Fybromyalgia again, I realised that I should put in to practise the Mickel Therapy again; it really did help.

am I making any sense at all! hope you have a better night tonight

[Hidden]

Hi Julie

Sorry you are not doing so well at the mo.

The book - the american view - clearly they do not have RA or chronic pain. If the pain is in my brain why do my joints swell and refuse to move?

Only people who have the disease should write about it!!

I daresay that because you have een so careful of late with your eating, the choccies were just to rich for your system

I am four months into anti-tnf after two years of struggle and am feeling better all the time. Managing stairs and in and out of chairs better, less flares and much shorter when I do flare.

Take care, hope things improve real soon

Luv Sue x

[Tiasteph]

Aww…your poor thing

I remember nights like that, endless & awful.

As for that book….phaaa, chuck it out! What an awful & ridiculous statement! Patrick Holford is a good read think its called Say no to Arthritis. He is English.

Hope your feeling better today xx

[caroline777]

Hi Julie

I survive with talking books on my ipod. I think I have got through about 20 in the last 6 months. My hands won't let me hold a book in bed - especially a hard back - some chance (chuckle!!) but I don't disturb anyone, the light is off, I can try and get reasonably comfortable and if I do doze off I have lost nothing because I can rewind it. WARNING don't get a comedy - it makes the bed shake and my husband thinks I have gone completely bonkers as I lay there chickling - apparently at nothing!!

Night night and sweet repose xxx

Caroline

[Hidden in reply to caroline777]

This made me smile - nay shake with laughter!

[Hidden]

Hi all I was going to reply to you all, but I have so much to say, I thought this is going to get silly, so I am re-blogging it. I hope I can make sense of me, the book, the pain, and this bloody awful RA!!!!

Take care me loverlies xxxx